From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences

Abstract

Background: The National Dementia Strategy in England stressed the importance of earlier diagnosis of dementia. In-depth knowledge of the experiences of patients using such services remains an evidence gap.

Aim: To increase understanding of the experiences of people developing dementia and of their carers, to inform practice and decision making.

Design and setting: A retrospective and prospective qualitative interview study of participants recruited from four memory clinics in London, the north-west and the north-east of England.

Method: Purposive sampling was used to recruit 27 individuals with memory problems and 26 supporters and carers. Interviews explored referral pathways, assessment processes, disclosure of the diagnosis, experiences of being prescribed medication to help with symptoms, and issues of risk and decision making.

Results: Few participants experienced the process of memory assessment as patient centred. Where assessment processes were lengthy and drawn out, participants experienced considerable uncertainty. Many experienced tests and assessments as distressing, sometimes in settings that were perceived as alarming or potentially stigmatising by association. Information provision and communication were variable and practitioners were not always thought to help people to make sense of their experiences.

Conclusion: The transition from the early stages of cognitive impairment is not straightforward. There is potentially much uncertainty and waiting. Primary care practitioners may be better able to provide tailored support to individuals and their carers during this time if they are aware of what patients are anticipating and are informed about the diagnostic 'journey' by the insights of those who have experienced it.